I have always had a funky stomach. As a very young child I recall laying on my stomach on the living room floor trying to alleviate the horrible cramps and pains I used to get on a regular basis. Coming from a family full of tummy trouble, I thought it was normal and never complained. As a teenager the pains became worse and my Mom and I took a trip to the pediatrician to find out what was wrong. He said I had a spastic colon and that I needed to eat healthier and he taught me how to massage my stomach to get things moving along. I loved my pediatrician but that advice wasn’t so helpful. Telling a teenager to “eat healthy”? Right.
I went away to college and learned all about cheap beer and the freshman fifteen. I ate and drank whatever I want. I learned to ignore my wonky belly and just enjoyed the good life that college most certainly provided. By the time I turned 20 I had gained about 50 pounds and was pretty much sick all the time. I was miserable, moody, and just ill. My boyfriend at the time certainly noticed and when he called me out on it, I went back to the doctor, this time my adult primary care physician. That’s when I heard it for the first time – IBS – Irritable Bowel Syndrome. She handed me a one page, poorly photocopied handout explaining IBS and what to do about it. Eat more fiber. There’s no cure. That’s all we can tell you. Have a nice day!
So I started eating healthier, whole grains, fruits, veggies… the healthier I ate, the worse I felt. I joined Weight Watchers and using their points system I lost 25 pounds and also started exercising again. I felt better for the most part, but my stomach troubles persisted. Horrible constipation, diarrhea, gas, bloating, pain, nausea. I didn’t think there was anything else I could do so I just lived with it. Eventually my symptoms started to change. Infections, rashes, more stomach troubles. I’d go to the doctor for each symptom and they’d diagnose them individually. This infection gets this antibiotic, this rash gets this cream… but they just kept coming back. This is when I started to think that maybe all of these things were connected somehow. Maybe there was something else going on. I decided that it was up to me to figure it out since the doctors had been useless up until this point.
I dove into research and all of my symptoms together pointed to one thing – Celiac Disease. If you’re reading this website, you probably already know what that is, at the most basic level it is an autoimmune disease that is triggered by an intolerance to gluten. Gluten is the protein found in wheat, barley and rye and may often be a cross-contaminant in many brands of oats. What… you want me to stop eating bread? And drinking beer?? ABSURD!! But surely this is what I have because the symptoms match up so perfectly. The one I was the most focused on was the rash. I don’t want to go into too much detail but it was a very sensitive rash and there were only two options I could find and I knew for sure it wasn’t one of them so it had to be the other – Dermatitis Herpetiformis. The Celiac rash.
My Celiac research taught me many things about the disease and the gluten free lifestyle. Back in 2007 the gluten free blog boom was just beginning and the first one I came across was Shauna James Ahern – the original Gluten Free Girl. I learned that it’s best to get tested before going gluten free, so I found a new doctor and told him this whole story and asked to be tested. He told me that my symptoms (constipation dominance) were not “classic” Celiac symptoms and he thought for sure that it was IBS. I was devastated. He tested me anyway. My numbers were a little funky but not crazy enough to say I had the disease. He referred me to a gastroenterologist that basically told me I was young and healthy and he didn’t want to perform unnecessary invasive tests when he was also sure that I simply had IBS. At this point I’m completely turned off by medical doctors and determined to just go it alone. I read the Celiac Chicks, which are self-diagnosed, and I decided that I too could do this on my own.
A few weeks into this crazy new diet I most definitely felt better. It was a miracle!! I thought for sure that I was on the right path, but I kept reading various websites that were nagging me to get a clear diagnosis. I also found that without a diagnosis I was letting myself “cheat” on the diet a lot. One night I made plans to meet up with my old co-worker and friend Allie and she told me she was going to order a mixed drink because she can’t drink beer anymore. I almost fell off my barstool when she told me she had been diagnosed with Celiac!!! I was excited to have someone to talk to about all of this and she encouraged me to keep going and also to get tested, but I kept putting it off after the bad experiences I’d had with doctors in the past.
At the end of the summer of 2007 I came down with a terrible stomach virus that had been going around. It was just awful and within a couple of days I was so severely dehydrated that I wound up passing out 4 times in one night. My roommate drove me to the hospital at 4 in the morning and my Mom met us there. They pumped me full of fluids, ran some blood tests, told me I was fine and sent me on my way. I went for a follow up at the doctor’s office a few days later and they found that I was still dehydrated so they gave me another antibiotic. I eventually recovered but I lost 12 pounds in 2 weeks. A few months later I came down with the flu and once again became so dehydrated that I passed out and was taken to the hospital again, this time via my first ambulance ride! The ER doctor was puzzled as to why this was happening and my parents were very concerned (as was I) about my health. My bloodwork was all pretty normal and despite my frequent visits about my stomach problems, they couldn’t figure out what was wrong with me.
After two ER visits within 6 months I knew I had to push harder to find some answers. I was still convinced that I had Celiac so I searched the internet for a Celiac specialist and came across the Celiac Center at Beth Israel Deaconess Medical Center here in Boston. I made an appointment right away. When I met with The Doc I told him my whole history and he immediately scheduled me for a colonoscopy. I went in for the procedure on May 9, 2008. When I woke up from the anesthesia, the doctor was there and he informed me that it looks like I have Crohn’s Disease. Ummm, excuse me? I have what?? Crohn’s Disease, and here are the pictures of your insides to prove it.
Crohn’s Disease is also an autoimmune disease, but unlike Celiac, you can’t just cut gluten out of your diet and feel better. They don’t know what causes it or how to cure it and all they can do is medicate you until you feel better and then medicate you more to keep you that way. I am the type of person that only takes Advil as a last resort, so when they wanted to put me on steroids and chemotherapy drugs I was horrified to say the least. I put as much energy as I could into figuring out how I could turn this thing around and heal myself as naturally as possible. And so this blog was born. I decided after lots of reading that the gluten free diet was the way to go regardless of not having a Celiac diagnosis, and through trial and error I eventually eliminated dairy products as well.
I did allow the doctor to try it his way first, knowing that this is a serious disease. That was a roller coaster ride for sure and back in December of 2009 I received an urgent call from my doctor that the last medication I was on was causing my white blood cell count to drop too low and I had to stop it immediately. I was nervous for sure, I had been slacking on the diet since the meds were helping and I was scared of a relapse. I buckled down, went strictly gluten and dairy free and didn’t look back. I’ve been medication free ever since. I recently had a follow up visit with The Doc and he’s baffled at my remarkable success and is supporting my request to stay med free as long as I’m in remission. Today I feel better than I have in my entire life and that’s why I write this website. I want other people to know that there is hope! I firmly believe that health can be achieved through proper nutrition and I will continue to share my story so that others may find healing.
Author Information: Jen Hadley, Boston, MA
Jen blogs about living Gluten and Dairy Free with Crohn’s Disease.
She can be reached by email here.